No surprise here: March 2012

Research articles - parent experience

I am doing a periodic Scholar Google search for new research articles about Down Syndrome. Here are some about reported parent experience.

“It’s not what you were expecting, but it’s still a beautiful journey”: the experience of mothers of children with Down syndrome

Journal: Disability and Rehabilitation
Posted online on February 11, 2012. (doi:10.3109/09638288.2011.650313)

Divia Pillay, Sonya Girdler, Marie Collins, Helen Leonard

Abstract
The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore what if any was the role of spirituality and organized religion in this experience.

Method: A homogenous sample of eight mothers of children between 7 and 12 years of age with Down syndrome was recruited through a population-based source of families of children with Down syndrome in Western Australia. In-depth interviews were used to explore the mother’s experience of parenting and to examine the role of spirituality and organized religion in their personal experience of mothering.

Results: In this study, stressful life events recounted by the mothers included initial acceptance, developmental behaviour of the child, functionality of the child, health conditions and financial stress. Overall spirituality was described as a stronger and more dynamic source of support than organized religion in coping with stressors and life’s challenges associated with raising a child with Down syndrome.

Conclusion: Findings from this study revealed that being a mother to a child with Down syndrome can best be described as a mosaic of experiences, emotions and a journey of self growth. Both spirituality and organized religion to a greater or lesser extent were useful in mediating stress and supporting mothers particularly during challenging life events in the course of their journey with their child with Down syndrome.

Implications for Rehabilitation

Being a mother to a child with Down syndrome has been described as a mosaic of experiences and emotions including a journey of self growth.
The birth and diagnosis of a child with Down syndrome are most difficult and stressful experience for a mother.
Supports such as family, friends, spirituality and religion can play a key role in helping mothers of children with Down syndrome cope.
Health care providers need to understand the significance of holistic support systems for families with a child with Down syndrome.

Psychological Well-being in Fathers of Adolescents and Young Adults With Down Syndrome, Fragile X Syndrome, and Autism
Journal: Family Relations
Sigan L. Hartley, Marsha Mailick Seltzer, Lara Head, Leonard Abbeduto

Article first published online: 13 MAR 2012 (doi: 10.1111/j.1741-3729.2011.00693.x)

Abstract
The psychological well-being of fathers of children with developmental disabilities remains poorly understood. The present study examined depressive symptoms, pessimism, and coping in fathers of adolescents and young adults with Down syndrome (DS;n = 59), autism spectrum disorders (ASDs;n = 135), and Fragile X syndrome (n = 46). Fathers of sons or daughters with ASDs reported a higher level of depressive symptoms than the other groups of fathers. Fathers of sons or daughters with DS reported a lower level of pessimism than the other groups of fathers. There were no group differences in paternal coping style. Group differences in paternal depressive symptoms and pessimism were, in part, related to differences in paternal age, the child's behavior problems, risk of having additional children with a disability, and maternal depressive symptoms. Findings from this study can be used to educate providers and design services for fathers during the later parenting years.

Balance Disc

I've just found this article yesterday.

Balance exercises in Children with Down's Syndrome:A Randomised Controlled Trial

Sharma A, Ganesan S, Tedla JS (2012) Balance exercises in Children with Down's Syndrome:A Randomised Controlled Trial. International Journal of Current Research and Review , 4 (1). pp. 130-134.

Abstract

Objectives: To compare the effect of balance exercises and standardized exercises in children with Down‟s syndrome. Methods: 30 children with Down syndrome aged 5-15 years were assigned to the experimental and control group using block randomization. Children in the experimental group underwent balance exercise program whereas children in the control group underwent standardised exercise program, twice per week for a total of 6 weeks. Results: There was significant improvement in both the groups on the Pediatric Balance scale and the gross motor function measure scores. However the experimental group showed a greater improvement than the control group. Conclusion: Balance exercises are better than standardised exercises in improving the dynamic balance and gross motor function in children with Down syndrome.

This team is from, don't laugh, Department of physiotherapy, Kasturba Medical College, Mangalore. So, the credentials are not that amazing. I actually had to Google "Mangalore" (it's an Indian city). This being said, the findings resonated with me. My son is very active and is doing a fair amount of physical therapy since forever. Still, I am worried about his posture and it has to do with his core musculature not being stimulated in an efficient way. Somehow, all this therapy is not enough.

Anyway, for a while now I was considering buying a balance disc, both for me and for my son. They are supposed to improve posture and work all sort of muscles. This article gave me the excuse to finally do it, so I just order two discs (green and purple) today. We'll see if my son likes it. I'm thinking about getting another one for my office - they are supposed to relieve back stress from spending too much time in a chair.

Update: We are using these discs.They both work great. In our house, everything works better if we take turns, so we have 2 balancing discs (or stability discs).

Sight reading

My son is 4 years old. There is plenty of evidence that teaching sight reading to children with DS is not only possible, but a really great idea. The Down Syndrome Ed website provides all the research on the subject (plus tutorials and materials for their See and Learn method). Bottom line, we really wanted to do this. We first tried using cards, but my son didn't have the patience and I wasn't determined enough (it was at least a year ago). We also tried "Your baby can read" videos. We used the videos for about a year on and off, and he started to recognize some words, but it wasn't clear how to move from words to sentences. We also bought the See and Learn app for iPad and, although I liked it, we only used it sporadically. Basically, we were interested, but couldn't apply ourselves.

Last month, I was reading Down Syndrome Parenting 101: Must-have advice for making your life easier, by Natalie Hale. I've been reading so many parenting and DS books during the last 3 years that they all kind of blend together in my head. But I'm still looking for the ultimate advice, so I keep on reading. I'm usually happy if, after I finish a book, I still remember one good idea. What stuck with me from this book was the idea that children with DS entering kindergarten knowing to read are less likely to be underestimated by the school, more likely to receive an inclusive placement, and in general perceived as more capable learners. Obviously, this is incredible unfair, but I completely believe it to be true.

Well, now I have my deadline. I love deadlines!!!

So, we got serious about sight reading. I mentioned before that both my son and I are addicted to the iPad, so using the See and Learn app seemed the most natural choice. We've been doing "homework" every day for the past two weeks. It is not the most exciting thing one can do with the iPad, and my son knows that very well. It is also kind of boring, looking at the same words over and over again. But it works!! My son now recognizes at least 8 words. I'm going to start putting together small books using these words to make it more interesting for him. We'll definitely continue with this!

Down Syndrome congress

We attended a Down Syndrome congress conference last month.

Libby Kumin was invited and I attended two of her sessions (speech from birth to 5 years, and the educators session speech for K12). Remember the speech book I didn't like? I liked her in person a lot, she is an engaging speaker. Very clear presentations. Speaking about the nine types of intelligence (and how only two are tested and appreciated in schools), she gave this quote by Albert Einstein: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” Mrs. Kumin recommended using pacing boards to increase MLU (mean length of utterance), even at young ages. Our speech therapist liked the idea too, my son might be ready for this. We are trying to move from mostly one-word phrases to mostly two-word phrases.

I've made these pacing boards - actual size - one face has 2 circles, the other face has 3 circles. I've cut them, put them back to back, and then laminate them. I've made 5 pacing boards. My husband and I carry one on our back pockets, one for the dinner table, one for my son's room and one to spare. It's such a simple idea, I hope we'll have the patience to make it work. Our speech therapist showed us how to use them for words, but also for syllables. We are working on "ba-na-na". My son skips the leading "ba" syllable. First, we model, pointing to the circles, second we do hand-over-hand with my son, and third we encourage him to say it.

I've also attended a session on behavioral workshop. The speaker made an effort to put behavior issues in perspective. Highlighting the fact that children with DS often "misbehave" out of the frustration of not being able to negotiate their position or their role. It wasn't bad, but nothing really new in terms of advice, especially if you've read enough positive parenting books.

reinforce desired behavior
do not reinforce undesired behavior (aka ignore)
model desired behavior
redirect
distract and redirect
connect and redirect
give choices
do not get personal when angry (do not make eye contact, raise voice, get agitated)
picking battles (non-negotiable, situation dependent, whatever)

Down syndrome supplements

March 3rd, 2012

There is circumstantial and anecdotal evidence that some supplements may be particularly helpful for Down syndrome. At the moment, mainstream doctors/pediatricians do not recommend supplements targeted for Down syndrome. With no particular help from our pediatrician or developmental doctor, we were left to do our own research and take our own decisions. So, this is what we did.

Please, do your own research. I do not recommend these supplements here, as I am not a doctor. I'm only sharing our experience.

List of supplements my son takes now:
Morning: longvida curcumin, ginkgo biloba, omega 3 with D3, probiotic (alternate Culturelle/ Garden of Life every 3 weeks), B12
Evening: ginkgo biloba

What you need to know:

Ginkgo needs to be Standardized Extract containing min. 24% Ginkgoflavonglycosides and 6% Terpene Lactones.
Curcumin needs to be longvida for increased bioavailability.
Omega 3 needs to be mainly DHA.

After we introduced longvida curcumin we've noticed an increase in speech. This is very subjective, of course, my son was ready to talk more anyway. His teacher also commented on how much more he's talking. After we introduced ginkgo in the morning, the nap was significantly reduced. After we introduced ginkgo in the evening, the night sleep was reduced by an hour. His energy levels stayed the same, so I really think his sleep got more efficient. I'm very pleased with this effect, since the main reason I introduced ginkgo was to increase REM sleep, which is supposed to help with memory consolidation. Before ginkgo, my son scored 5% REM during a sleep study (vs. 25% typical for age). This is often the case for children with DS.

What we did:

decided to wait until 3 years old. Some parents start very early and it seems fine.
did a lot of research/reading. See list below.
considered only supplements with solid safety record.
decided against Prozac, Focalin XR
I tried each supplement first for a couple of weeks - just looking for weird side effects.
introduced one supplement at a time.
introduced supplements in the morning.
introduced at lower dose, increased gradually

When giving curcumin, ginkgo and omega 3, clotting tests are recommended after 3 months on supplements to check for unforeseen interactions between the three. I'm also planning to ask for zinc levels check. Research shows that zinc levels may start to decrease starting from 4 years old in children with DS. I'm keeping in mind the risk of sulfation deficiency, but I don't think will be a problem at the current dosages.

Resources we've considered:

Virgin coconut oil truffles

3 tablespoons virgin coconut oil (VCO)

1 1/2 tablespoons unsweetened cocoa powder

1 tablespoon honey

optional - ground walnuts, coconut flakes, date paste

Melt the VCO to liquid. Mix everything together. Spoon small portions. Store in the fridge.

I have been considering for years adding more VCO to my diet. It's supposed to be some kind of miracle food. Unfortunately, I'm not a big fan of the flavor, so it just seemed too complicated. Well, I've found out that VCO is really good for people with Down syndrome (regulates thyroid function, helps digestion and promotes weight loss). Now I have a really good reason to try it. I've bought some VCO from Trader Joe's and added a teaspoon to my son's meal at dinner. He wasn't enthusiastic (sometimes you can really tell he enjoys his meal), but he ate it, so I was happy. I think he thought this was a one time thing and mommy was entitled to one culinary mistake. By the second day, he took a bite, pushed the plate away and said "mama, bread, cheese". He signed too, so this was serious. Every time I tried after that, I got a similar reaction. I went back online to look for some ideas and I've found the VCO truffles recipe. By the way, the original recipe asks for 3 tablespoons of cocoa, but it seemed unnecessary for my purpose. Well, I've made the truffles and my son eats 2 every morning (it's been around 10 days now). I'm also eating 2 or 3 in the morning and they've replaced my breakfast - they are very filling.

Xylitol for sinus infection

My son had 3 sinus infections in 3 years and a half. Maybe not bad, but to me this is 3 times too many. Not to mentioned that last time it was so bad, he was on antibiotics for 20 days. A week ago it seemed that another sinus infection was coming. The signs were pretty clear - thick, greenish discharge, mouth breathing, night discomfort. I remembered one of the posts from Got Down Syndrome blog, about making a nasal spray for sinus infection.

The instruction was "For 2/3 cup of saline you would put 150mg of Glutathione (either liquid or opened capsules) and 1/4 teaspoon Xylitol (optional). Spray this up the nose as often as you would like!". Never use tap water! I use boiled water. Distilled water should work too. I started researching Glutathione, but I wasn't comfortable using it. Plus you have to buy 50 pills to use one (and is not cheap). But I am more than comfortable using Xylitol, so I did that. I bought Little noses salines spray (just too lazy to make one myself) and added 2 teaspoons of Xylitol (here is the recipe). We used it 4 times a day during the weekend and twice a day on weekdays. My son didn't like it, but it worked great. By the fourth day it was clear we managed to avoid the antibiotics this time. I'm pretty sure it was the Xylitol, but it may be that the infection was not that strong to begin with. We'll see what happens next time. The reason why Xylitol works is because bacteria can't metabolize it due to its unique carbon structure. Apparently, this kills the bacteria. I feel compelled to mention that I'm in no way qualified to give medical advice, so, obviously, I don't.

Update: we are now using XLEAR Natural Saline Nasal Spray with Xylitol. Ready to use and works great.

Speech progress

My son is 3 and a half years old. He gets speech therapy twice a week (30min sessions) from the public school. He is also seeing a private speech therapist weekly (30min sessions).

It is great to be us these days! We see so much progress with speech and communication, it is exciting and overwhelming (in a really good way)! So, from the beginning.

We starting using sign language with my son when he was a couple of months old. The recommendation seems to be to start slow with only a few signs, but that doesn't fit my personality at all. So, as soon as we found out that our son had DS, I bought a couple of sign language books and started learning. I also took a ASL class, but that was for myself (my obsession to learning everything there is about a subject), completely unnecessary for teaching your kid basic sign language. We immersed our son in sign language, that is we used all the signs we knew when talking to him. As soon as he was able to sit, we let him watch Signing time videos. Those were a great investment - this is how the whole family learned sign language, including grandparents! For a while nothing happened, we got no signs back and it was frustrating. The temptation to stop was there, but it helped that we were seeing older children using sign language and benefiting from it. My son started signing around 1 year old. I don't remember exactly, but he started with the usual signs (more, milk, eat, mama, daddy). He then progressed in leaps and bound. By 2, he was having a vocabulary of more than 100 signs and was correcting his EI speech therapist ("gorilla, not monkey"). Spoken words were hard to come.

In terms of therapy, he received EI speech therapy from 1 year old. We started once a month. This was ridiculously little, but we had to fight hard to get speech therapy, so we decided to take what was offered. This was changed to twice monthly when he was 18 months (we are very persistent people), and to weekly sessions when he was 24 months old. At 24 months we added weekly private speech therapy. I just want to say that we loved our EI team. All therapists were great and it really felt like a collaboration. In general, I appreciate the EI model of family centered therapy. It worked very well for us. We especially loved and appreciated the EI team in retrospect when we moved to the public school system. But this is another story!

"No". One of the first spoken words we heard. And then we kept on hearing it! Still a favorite, although these days is slowly (but surely) replaced by "mine!!!". Speech came slowly. At 3, my son was using about 50 spoken words. He started using two words phrases - combining signs and speech. His receptive language was much better than his expressive language and continues to be so. By the way, he was evaluated at 3 years old, before transitioning to the public school system and scored at 21 months in all areas of development.

Anyway, now at 44 months, he is doing great. He is using more and more 3 words phrases, although most of the communication is in one or two words phrases. It is mostly speech, but he will use signs for clarification (or emphasis!). He is making a lot of verbal requests. He is doing some commenting. He just started to respond to where, what and who questions. Speech intelligibility seems OK for where he is developmentally, but it is too soon to tell.

Last week I was reading the speech information page from the Down Syndrome Ed website. I go there often for ideas on what to do next. There were some nice statistics (see their tables) about total words (spoken and understood) per age categories. So, two days ago my husband and I spent the evening writing down all the words we heard my son say and then those words we know he understands. We only counted spoken words, so the total (which is pretty good as it is) is an underestimation. Spoken words: 171 (for his age group mean is 116.7, stdev 102.9, range 1-399). Words he understands: 320 (for his age group mean is 233.4, stdev 93, range 69-424). Not bad, I think. That was a good evening!

An issue we are having with speech and communication is that, while my son is talking a lot at home, he doesn't do the same at school. We hope he will be able to generalize the skill soon, but it is currently hard for him to interact with his peers. His mode of approaching his friends is by touching them and often times this is perceived as aggression. His teachers and therapists are working on ways to extend this interaction from physical gestures to speech or sign.

In terms of resources, I've been trying to use Libby Kumin's book, Early Communication Skills for Children With Down Syndrome: A Guide for Parents and Professionals. As with the fine motor skills book, I've found this book to be more for professionals than for parents.While I don't find if useful for practical advice, I use it to get questions for our speech therapists and to learn some terminology.

The book that I love best for speech and communication advice, is Play to talk: A practical guide to help your late-talking child join the conversation by James MacDonald and Pam Stoika. A really great title too! I've read the book twice (and I'm getting ready to do it again). My husband read the book. We tried hard to implement the ideas. It sounds simple, but it is very hard, especially for a parent with an agenda - a teaching agenda. Basic idea: you want the make your child a partner in communication. So, the most important advice, don't hijack the conversation. Research shows that parents (especially moms) of children with special needs talk too much. We need to match our children, giving just as much as receiving. The goal is to keep them in the loop for as long as possible. This applies to play interaction, non-verbal communication and finally speech. Once a solid connection and interaction is established, one can try moving to the next level - the child is using 2-word phrases, you respond with 3-word phrases. If the kid starts losing interest in interaction, go back to matching. He is not ready to move to the next step yet. The book is filled with good, specific, advice. A great read!

Baby babble DVDs. There are three DVDs available so far, and we've used the first two in the series. The DVDs are developed by two speech language pathologists. I was surprised to see that they indeed encourage sound production. Although my son was used to the visual and audio sophistication of Signing time, he accepted the Baby babble videos and responded to them. This is not a given - he rejected many other videos (Preschool Prep, Blue's Clues, First Word Stories). We tried a lot of them, we have a good public library.

Fine motor skills progress

My son is 3 and a half years old. He gets occupational therapy twice a week (30 min sessions) from the public school.

This is an area of concern for us. It is not unusual for children with DS to struggle with fine motor skill issues and my son is no exception. He is doing occupational therapy (OT) since he was 17 months old. We had to push our early intervention (EI) coordinator to get weekly OT sessions (they would have prefer to offer OT twice a month). There was a lot of progress during the years (there really was!), but definitely not as fast as we wished.

My son is eating by himself (started using a spoon around 2 years old with a lot of spills). He is still rotating the spoon, but got really good at controlling the spills. We are working on drinking from open cup. His preferred drinking method is with a straw (he mastered drinking through a straw when he was 1 years old). The current OT suggested using the small rinsing cup, so we are offering drinks in one of those cups during dinner. He will use it with help. He is using his "helper hand" to stabilize containers when eating soft foods. He is using a fork with some success.

He doesn't dress by himself (but, man, does he have an opinion on what he wants to wear!). He started taking his pants and diapers off independently. Working on removing his shirt. Tho months ago, he learned to put his coat on, using the dip-and-flip method! He is moving the zipper up and down appropriately to zip/unzip his coat.

We don't have and never had feeding issues. His swallowing is great. He eats a variety of food, lots of veggies. He tries new foods. His current favorite: cheese sandwich.

He is matching puzzles (the ones with knobs), but has trouble fitting the piece exactly in its slot. He has good pincer grasp. He is using writing utensils successfully holding them between his thumb and index finger. He can't use scissors yet. The OT reports he is imitating vertical/horizontal lines and circles. I should test this! He loves to paint. He loves books. He can turn the pages by himself on board books.

All this time I have been trying to use Maryanne Bruni's book, Fine Motor Skills for Children With Down Syndrome: A Guide for Parents And Professionals. I go back to it often because we could really use some help. I always end up frustrated. I don't know if it's the way the book is organized, if there is just too much terminology and not a lot of plain language, but I don't find it parent friendly. The book gave us some good ideas for what toys to buy. But reading the book, I still have no clue where my son is developmentally and where we should go next. My quest for a good fine motor skills book continues.

Updated 12/15/2018. My son is now 10. Reflecting back, here are my 5 favorite toys for fine motor skills and so much more.The links below are affiliate links, meaning that, at no cost to you, I earn a commission if you make a purchase using these links. If you decide to use these links, thank you. I only recommend what I own, use, and love.

Melissa and Doug Jumbo Knob Puzzles. There are so many of them! The farm animals puzzle was a favorite of ours, but explore them all. Great for little hands! Once they get better at it, move to puzzles with smaller knobs.
Nuts and bolts of any kind! Not sure if it's a boy thing, but my son loved to screw things. It was hard for him, but it help with hand skills as well as with teaching patience. Again, start with ones that are big and chunky, then move to smaller ones and let them progress with the skill.
Pegs. We bought our first peg board when my son was 3 and we used it for years. Great for sorting, counting, pushing in holes, stacking, taking turns, and so much more. We have the Stack it Peg Game and it was great, but I would probably recommend the Peg Board Games for Toddlers, because you get to work on shapes too.
Nesting toys of any type. Working on balancing objects, comparison, colors, counting, and so much more. I usually buy toys that I can use for years, and that kind of grow with the kid. We have the cheapest possible ones, but it can find really fancy ones too. When my son started working on counting I used a permanent marker to write the numbers on the cups, starting from the smaller one. The bonus: you can teach number comparison, by associating the smaller number with the smaller cup, and showing the progression to bigger numbers/bigger cups.
Whack a toy! Give my son a hammer and he can spend so much time with it. Melissa and Doug Pounding Bench does the job, but make sure to explore all the whack a mole toys.

There you have it. I hope this is useful. Please, let me know your favorites! I'm always looking for new ideas.

Gross motor skills progress

3 and a half years old

Gross motor skills

Currently gross motor skill is an area of strength, although it wasn't always like that. My son was born with low muscle tone in his upper body. Very strong lower body. He worked with a physical therapist (PT) since 3 months old. I should mention that he is, and always was, a big guy: 98 percentile height on typical kids chart, 95 percentile weight on typical chart, off the DS charts from birth. While this is great (my husband is tall and I'm not short), in the beginning, his height and weight made it difficult for him to move around. It's a great advantage now, no doubt about it, but I digress... He rolled over when he was about 7 months and sat independently at 11 months. We were very eager for him to sit and start exploring the world, so we pushed sitting on him and on his PT. In retrospect, that was a mistake and we are paying now with fine motor skills trouble. Basically, he didn't crawl. From sitting he started moving around scooting on his butt, and that was it until 27 months when he started walking. It was then when he started doing a little crawling around while playing for several months. Not enough for building muscle. If I were to do it again, I would purposefully discourage sitting and encourage crawling.

In these first years we used quite a bit Patricia Winder's gross motor skills book. I found the information in the book well organized and easy to use by parents. We used the book both for exercise ideas, but also to have a more meaningful dialog with our PT. In the end, she bought the book too.

Gross Motor Skills for Children With Down Syndrome: A Guide for Parents and Professionals

Anyway, once he started walking everything clicked. He started going up and down the stairs right away (holding rails, pacing steps). Soon he was fast walking. He is now going up and down the stairs alternating steps, no railing. He is going up and down a ladder! He is throwing and kicking balls. We are working on catching. He is very close to jumping (does some serious jumping when supported). He is attempting to walk on a balance beam, but needs help. His upper body got stronger, thanks to his current PT and his dad.

Regarding gross motor skill I have an ongoing concern about his posture. He tends to slouch both when walking and when sitting down, especially when tired. The PT and the developmental doctor don’t share this concern. My fear is they are thinking something like “well, children and adults with DS don’t have good posture and there is nothing one can do”. Maybe indeed there is nothing one can do, but I’m not happy about it and I will keep pushing the issue.

Updated 12/15/2018. My son is now 10. Reflecting back, here are my 5 favorite toys for gross motor skills and so much more.The links below are affiliate links, meaning that, at no cost to you, I earn a commission if you make a purchase using these links. If you decide to use these links, thank you. I only recommend what I own, use, and love.

Balancing toys - balancing is such a hard skill for many of our children. We have been working on balancing for more than 7 years. There is a lot of progress, but still hard. The school PT is working on balance. We are working on balance. At home we use balancing disks and balancing boards. They both work great. In our house, everything works better if we take turns, so we have 2 balancing disks (or stability disks) and 2 balancing boards. The good news is that all this training does wonders for my abs :).
Basketball is amazing for posture! We used Little Tikes Basketball Set for many years. We now have one of those over-the-door mini basketball hoops. He loves practicing and definitely getting better at it.
Lots of balls. We have sensory balls, soccer balls, football, exercise balls. Catching and throwing are such important gross motor skills goals. And gaining enough strength to do it well helps with fine motor skills, including writing. So we are working on it with every occasion. My son's favorite color used to be purple (now he's a big boy and his favorite color is black), so we have a purple exercise ball. I'm pretty sure it works as good as any other ball. And of course an assortment of sensory balls, which are easier to catch, so nice for emergent skills.
Frisbee rings. I find rings much easier to use than discs. We tried to introduce frisbee since my kid was 5. Every year we would try and every year we would give up. It was just hopeless. It got better when he was 8, and now he is pretty good at it. We enjoy playing frisbee as a family. Activ Life Frisbee Rings are the best rings out there.
Velcro ball and catch game - a present from our early intervention PT, they last forever and are great practice for catch and throw. We have the 4 paddle set, which allows the whole family to play.

There you have it. I hope this is useful. Please, let me know your favorites! I'm always looking for new ideas.

First things first - about us

My name is Andra. My son was born in 2008. He’s cute and funny. He happens to have Down syndrome. Yes, I was a 35+ years old mom. No, we did not have a prenatal diagnosis. Yes, it was our choice. No, we don’t regret it. Yes, it changed our lives. Yes, he is amazing. Yes, he is doing great. Yes, we are very optimistic about his future!

I'm a very private person trying to share my journey. Sorry for pictures from the back and anonymized documents. Also sorry for whatever spelling or grammar errors. I'm trying my best. English is not my first language.

To give you the context of my experience and perspective: I am not a doctor. Well, I am a doctor as I have a PhD, but I'm not a medical doctor. I am not a teacher. Well, I am a teacher as I work with college students, but I am not a special education or general education teacher. I am a mom. I am a trained educational parent consultant, special education advocate, and special education legislative advocate. I am involved with various organizations advocating for children with special needs and children with Down syndrome. I am involved with groups of parents of children with special needs and children with Down syndrome. I am also a researcher, so I'm comfortable reading and interpreting scientific resources. I am also comfortable making decisions based on those resources regarding both the health and the education of my son.

If you are the parent of a child with Down syndrome or other special needs, maybe you'll find some useful info here. I'm learning as I go along.

On our journey I've found many useful resources. I'm providing links to them. Some of them are affiliate links, meaning that if you decide to buy using these links I'm getting back an incredibly small percentage of your purchase, at no cost to you. All recommendations are for things that we used and found useful. If you decide to use these links - Thank you!

The world probably doesn't need another blog, but nevertheless, here we go!

Thank you for stopping by!

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